A Haven for Needy KidsWhen Jimaha gave birth to Ayanleh, it was obvious from his first cry that something was wrong. Kids like Ayanleh don’t squeak at birth, they scream. He emerged from the womb, a place of protection, into the harsh world where every physical touch and every change in temperature would send excruciating pain through his body. He looked like a victim of third-degree burns, his skin blistered and peeling off.
Ayanleh is a butterfly child, born with Epidermolysis Bullosa, an extremely rare skin condition in which the skin blisters and falls off, almost like they are disintegrating before the eyes of their parents. Most butterfly children don’t survive the first eighteen months of life. Those who do, die before their thirtieth birthday. Ayanleh was born in 2009 and every day of his life he has been in pain. His skin flakes off so rapidly that when I sat with Jimaha and Ayanleh for thirty minutes, by the time he got up to wander the room, the floor was littered with tiny scraps of dry skin.
His fingers and toes have been reduced to blunt nubs and his hair is the orangish color of kwashiorkor, a result of severe malnutrition. Ayanleh’s body has difficulty regulating temperature, especially heat, and ideally he would be in a cool, sterile environment twenty-four hours a day, though this would only slightly ease his torment. His parents can’t afford an air conditioner and Djibouti spends six months out of the year in extreme heat, which only increases his pain. Jimaha pours cool, filtered water over his head and rubs it into his cracked arms. Other women in the room urge her to remove the baggy shirt he wears, so that his tiny body can feel the ceiling fan directly on his skin.
As soon as Jimaha removes his shirt, Ayanleh jumps up and roams around the room. I tease him that he could become like Ayanleh Souleiman, Djibouti’s star athlete who holds the national record for the 1500 meters and is a medal contender for the 2016 Olympics.
“Afterall,” I say, “you have the same name.” Ayanleh means full of good fortune or luck.
A generation or two ago, Ayanleh would be locked away at home, an object of shame for his heartbroken family. He wouldn’t play or interact with other kids. He wouldn’t go out in public.
Today, Ayanleh is at school.
He isn’t in the classroom but he is welcome to wander in and out and no one makes fun of his skin or his awkward, stiff-legged gait. No one even stares at him, he is welcome here. He comes, with his mother, a few times a week for socialization, lunch, and to obtain medical help, though nothing really can help his condition.
I met Ayanleh at the primary school of the Association de Développement et Protection de l’Enfant a Besoin (the Association for the Development and Protection of Children in Need). This organization was founded by Saada Moumin Soubagleh in late 2014.
Saada had three primary goals in starting the association. First, to ensure that poor kids had sufficient food and clothing. Second, to encourage street kids to pursue an education instead of life on the streets. And third, to improve the quality of life for kids like Ayanleh, children born with special needs.
All of the children in the school (50 in class, with 220 on the waiting list) come from families who can’t afford other schools or the cost of school supplies. Many of the children used to wake up in the mornings and not know if they would eat that day. Some of them are homeless, few of them could read before coming here.
But now, they have a safe place to come every morning and three afternoons per week. They have one afternoon entirely devoted to sports, to letting the kids play and forget about hunger and heat and sickness. They know that at least on school days, they will get lunch, a snack, and, if there is enough money, maybe even breakfast.
Medical care is expensive and limited in Djibouti, many of the kids had never had a full physical check-up, so Saada brings in a doctor or nurse every two weeks to check on the kids and to instruct their parents on any special care their children might require.
School is free, lunch is free, and the school supplies are provided free so Saada spends a significant portion of her time searching for funding help with the school. The first time I visited, I met the employees of an agricultural project who had come to see the school. The second time I visited, two men from the Salaam Bank stopped by to hear about Saada’s vision.
“These kids have nothing,” she told the men. “But they are innocent, they are just kids. They are like angels.” This is what compels her to help them.
After the men left, she told me that the most urgent need on her heart this week is that the kids could celebrate Eid, with new clothes and a feast. She isn’t sure where the money or supplies will come from in order to accomplish this, and maybe this holiday will pass by without the celebration. But she refuses to be discouraged.
While we talk, she waves at the classroom where fifty children, ages five through twelve, are quietly studying the alphabet and the days of the week. There is only one teacher, Zamzam, and I have never seen a calmer classroom in Djibouti. The children bend over their chalkboards, some of them still nibbling potato chips left over from snack time. Their concentration is sincere.
Here, tucked away in Gabode 4, is a peaceful haven where kids are care for, welcomed, and where they can learn. Here is a place where those who were without Ayaan are finding hope and good fortune.
Rachel Pieh Jones is an American writer who lives is Djibouti. Follow her on Twitter @.